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How do you manage side effects of Multiple Myeloma?

How do you manage side effects of Multiple Myeloma?

Posted by JLAL on Dec 15, 2019 11:05 am

My husband was diagnosed 2 weeks ago and has received 2 treatments so far.  The daily steroid was decreased to weekly last Tuesday and he's been stiff and achy ever since.  He is also having trouble sleeping, sometimes barely sleeping at all, and this is causing additional stress, headaches etc.  Has anyone dealt with this and if so, how did you manage?  Currently he only takes extra strength Tylenol for pain and has nothing for the insomnia.  
 

Re: How do you manage side effects of Multiple Myeloma?

Posted by ACH2015 on Dec 15, 2019 11:41 am

Hi JLAL‍ 

I am tagging CoastalGuarder‍ and Beryl the peril‍ for you. Both are recent members that identify with Multiple Myeloma as caregivers or patients.

I'd also like to share a link from the Canadian Cancer Society that offers ways to cope with pain.  Pain Relief: A guide for People with Cancer.

I have also been on steroids for part of my treatment. The weaning down of the drugs is usually a gradual process to avoid a crash. The steroids may have been helping to mask the pain as part of their purpose, and or the treatments (you said treatments, but not specifically what they are) side effects may also be responsible for the pain, insomnia and discomfort.

I'd like to suggest that speaking with the oncologist may lead to pinpointing the causes of the pain, headaches and insomnia, toward a more direct means of dealing with these issues. There may be more than one cause. Many of us patients find it very helpful to create and keep a journal. Include date of treatment, drugs involved, symptoms and severity, when they began, what did and didn't help etc... This information can help the medical team pin point solutions or atleast reduce them as much as possible.

Coping When You Have Cancer is another CCS resource I'd like to share with you. Good information for both the patient and family members, as well as Multiple Myeloma: Understanding your Diagnosis

Check out the forums and groups on this site when you get a chance to look around.

Lots of support and assistance for you and your husband.

ACH2015.
 

Re: How do you manage side effects of Multiple Myeloma?

Posted by Beryl the peril on Dec 15, 2019 1:52 pm

JLAL‍  I was very lucky in that my Husband was a very strong advocate for me ensuring the Oncologist and the Nursing staff were updated with how I felt and what we thought I needed. The whole staff were on board and we saw the pain management Doctor to get the pain medication going as well as sleeping - my Oncologist gave me Lorazapan which suits me and I get a great sleep each and every night - another patient I know also uses Lorazapan and finds the same thing.  Keeping a journal of absolutely everything that happens in your day right at the start of your treatment especially, is a really good idea - when your taking pills, what they are, how your feeling, and of course a lot of the pills you have to take causes constipation, so taking stuff to keep you regular is also important - again record when you go! 

Re: How do you manage side effects of Multiple Myeloma?

Posted by CoastalGuarder on Dec 16, 2019 3:12 am

Hi JLAL‍  I identify with the insomnia. My dad is having trouble sleeping. We haven't figured out yet if it's because of myeloma or the anxiety/depression associated with cancer, but I definitely relate to the stress of the person experiencing it. Is it like an arthritic pain? My dad is having problems with his wrists and neck/shoulders that's part of his insomnia problem. It's really painful to watch your loved one in pain. My dad is fortunate enough to have a nurse as a tenant, who recommended Advil 12-hour as a relief to joint pain. It was a miracle drug for my dad. Unfortunately, he had to stop because of existing kidney issues. But if your husband doesn't have diabetes/kidney complications, have him ask his doctor if Advil 12-hour is ok for him. If the pain relief is successful, it may make sleep easier for him. If anxiety is an issue, maybe ask about a mild anti-anxiety drug. I totally get this, as my dad is going through the same things. There are good days and bad. Some days my dad sleeps well, and others not at all.

Re: How do you manage side effects of Multiple Myeloma?

Posted by Lacey_Moderator on Dec 16, 2019 11:52 am

ACH2015‍ thank you for tagging!

CoastalGuarder‍ and Beryl the peril‍ thank you for your replies. 

JLAL‍- Welcome to our community. I hope you are able to talk to the Doctor and figure out your husband's pain and insomnia. Keep us posted.

Lacey

Re: How do you manage side effects of Multiple Myeloma?

Posted by JLAL on Dec 17, 2019 12:02 pm

Thanks so much to you all for the information.  It seems every day there's a new side effect so it's been tricky to manage.  We have a chemo treatment this afternoon so I will ask about something to help with sleep and pain (he's not able to take Advil due to kidney issues related to MM).  He is currently getting 2 needles once per week...bortezomib/Velcade & cyclophosphamide/Procytox/Cyborg-D.  I believe there is one other med that will be added once his creatinine gets closer to normal levels.  It's interesting that you mentioned being weaned off of the steroid as they didn't do that at all, he was taking it for 10 days and then had his last done last Tuesday.  Ever since it was discontinued he's felt much worse and has had no energy; I understand the steroid was helping with that but still seems odd that he wasn't weaned.  I'll ask about that as well.  Today he's feeling very lightheaded which is a new side effect.  Hopefully we can get some of this cleared up at our appointment today.

Re: How do you manage side effects of Multiple Myeloma?

Posted by ACH2015 on Dec 17, 2019 7:15 pm

Hi JLAL‍ 

I should have given you some additional info when I mentioned being weaned from steroids.

After I suffered complications form immunotherapy, I required a high dose (150 mg daily) of steroids. I was on the steroids for almost 5 months, and required a taper down from 150 mg daily to 2 mg every other day at the end.

I don't know the dose your husband was at until he was dropped down from daily to once per week.

Steroids can cause our normal adrenal, thyroid and pituitary glands to stop working on their own as the steroids artificially provide the body with those functions. Tapering from the steroids as I said helps reduce the "crash" because your body literally has to restart those glands to work on their own again. For me it was like functioning in a brown out, no energy and a long term readjustment period until my systems kicked back in again.

I remember the "crash" I suffered after each chemo treatment. 3 days of 50 mg of dexamethasone (once daily) dropped me like a rock. Of course there are the side effects of the systemic treatment to take into consideration with declining energy as well.

I'm interested to hear what the medical team says about this. 10 consecutive days of steroids to once weekly are most likely the culprit.

Keep in touch and keep well.

ACH2015

Re: How do you manage side effects of Multiple Myeloma?

Posted by JLAL on Dec 19, 2019 5:49 pm

Hi All,
It turns out my husband was feeling so poorly due to low hemoglobin.  They did a blood transfusion yesterday morning and he felt better instantly.  Fingers crossed nothing else pops up!
Take care,
 

Re: How do you manage side effects of Multiple Myeloma?

Posted by ACH2015 on Dec 19, 2019 6:27 pm

Hi JLAL‍ 

Thank you for keeping us in the loop.

Glad to hear it was a simple fix. Low hemoglobin can occur for many reasons - if not from blood loss directly (i.e. - surgery)  chemotherapy can be a culprit.

ACH2015

 

Re: How do you manage side effects of Multiple Myeloma?

Posted by JLAL on Dec 28, 2019 8:41 pm

Hi Again,
I hope you've all been able to enjoy the holidays.  I wanted to ask if anyone who has experienced Myeloma or the chemo treatments has had issues with taste or smell.  My husband is struggling to taste pretty much anything and what he can taste isn't always accurate (vanilla ice cream tastes salty?).  Just wondered if this is typical or if he's invented a brand new side effect?
Thx as always,
Jo

Re: How do you manage side effects of Multiple Myeloma?

Posted by Cynthia Mac on Dec 29, 2019 8:56 am

Hi, JLAL‍ , welcome to Cancer Connection. Chemotherapy can definitely affect the way food tastes. My Dad says “everything tastes like mud” for about 10 days after his treatment. Sadly, he has not “invented a new side effect.” 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: How do you manage side effects of Multiple Myeloma?

Posted by JLAL on Dec 31, 2019 5:12 pm

Thanks Cynthia. 
I did google it and seems like this will be another 'new normal' at least until his treatments are complete.  We'll just keep trying new things to determine what doesn't taste like mud!
Happy New Year!

Re: How do you manage side effects of Multiple Myeloma?

Posted by EvaJ on May 3, 2020 1:14 pm

With respect to the taste of food after my stem cell transplant all food was either too salty or too sweet, or too bitter. It took a few months for my taste to become somewhat normal. 

Re: How do you manage side effects of Multiple Myeloma?

Posted by rahul on Sep 24, 2020 2:47 pm

I went through the side effects during my treatment as well. I was taking sleeping pills for the insomnia caused by steroids but what I found was that to have the steroids earlier on in the day. I also started taking CBD oil after my first transplant and frankly it made a huge difference in my sleep and pain that was caused by neuropathy. In retrospect if I had taken CBD oil during Cy-Bor-D treatment I believe it would have gone even more smoothly. 

Re: How do you manage side effects of Multiple Myeloma?

Posted by Hope1561 on Oct 21, 2020 5:11 pm

I switched to a 100% whole food plant based diet. Pain went away.